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A Moment of Understanding

Let me start by saying that I know I am very lucky to have an incredibly supportive and understanding husband who has never offered me anything but love and concern. I am also very lucky because although I have Lupus, Sjogren's, APS and Raynaud's, I am NOT yet (and hopefully not EVER) sick enough to be hospitalized or need meds beyond prescription vitamin D, Plaquenil, and occasional migraine meds.

However - even though I fall into the "mild to moderate" end of things, a couple of years ago I had a 12-18-month flare (I guess that's what it was) that was pretty debilitating - fatigue bordering on narcolepsy, whole-body pain, one toe turned black and almost split open, severe S-I joint problems, and some very scary neuro symptoms (some of which mimicked early-onset Alzheimer's), and recently I lost some sight in one eye due to the APS. This was all pre-diagnosis.

ANYWAY - my Dear Husband ("DH" hereafter) is obnoxiously healthy - always has lots of energy. But about a month ago, he came down with a flu. He seldom gets even 10% as sick as anybody else, so he went ahead and ran the half-marathon he was signed up for, despite feeling "a little off" (go ahead and insert headsmack and eye-roll here...I certainly did, L O L...)

Because of the extra stress on his body from the race, he ended up being pretty sick, and for the last month has been fighting bacterial bronchitis/pneumonia. He's not been sick enough to stay home, but trying to keep powering through "normal life" while constantly feeling out-of-breath, achy, mildly feverish, and exhausted, no matter how much he slept.

So we were talking in the car the other day as we drove someplace, and as he talked about stuff, I said (not in a mean way) "Hey - it's like we switched lives for a while: I am starting to feel better..." (Plaquenil? Vitamins? Anti-inflammatories? Who knows....) "...and you are feeling like I usually do. It sucks, doesn't it? Imagine feeling like that for almost two years, and nobody knowing what was going on..."

He paused for a while and then it was like he really "got it" (not that he ever doubted me before). I think it was a really useful experience for both of us.

Anyway - DH is on the mend, and hopefully so am I. But at least I feel like we've got this little bit of "shared experience" in the bank for the bad times, when the Lupus/Sjogren's/etc raises its ugly head and bites me in the butt, as I'm sure it's bound to do some time.

The best I can do to describe it to people is to say "it feels like having the flu...ALL THE TIME - minus the sneezing and coughing." But sometimes people have to be close to that experience to really "get it".

Sleepy,
LOL - I loved this. I also have an obnoxiously healthy DH. He's a long-time military officer, and he is unhappy with himself if he scores less than 95% on the yearly physical fitness test. (Only 70% is needed to pass). At 55, he's the oldest student at the Naval Postgraduate School, and he rides his bike to school every day.
Luckily for me, he had one of these reversal of fortunes about 11 years ago. He had disc surgery on his back, and spent quite a long time feeling helpless in his recliner while he recovered. Sometimes when I just can't put one foot in front of the other to walk it reminds him of how it was for him, and he says so.
I encourage that empathy on his part.
Hugs,
Marla

may I join the club of obnoxioussly healthy husbands? On those few occassions when he does get sick, he does mention that he cannot imagine feeling this way all of the time. He is also cari g enough to say that he feels stupid complaining about his aches & pains that only happens occassionaly, when he knows that I deal with pain & ilness every sngle day.
I am glad that you & your husba d were a le to make this connevtion wnich gives him a bit more understanding:

Its the same for me, and its the first time its happened. My new boyfriend (4 months so far) is very understanding and he's pretty much never sick. He does have Charcot–Marie–Tooth Syndrome, which makes it a little difficult to walk and very easy for him to fall down, but he doesn't deal with daily aches and pains or feeling like he has the flu 24/7. I am always worried that I complain too much or annoy him or something and one day he told me, "You don't make life hard for me, I have no right because it is YOU who is dealing with this, not me".

I love him to pieces, for who he is and for this, finally its happening, the good people are starting to show up in my life.

"With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

Its not just husbands that can be healthy and oblivious.
My wife 10 years my junior is rarely sick and although I know she understands my illness (she is a nurse) she sometimes forgets because as we all know we can look ok and feel terrible.
But believe me I'm not complaining I am truly blessed to have her, even if she does forget and asks me to go to the beach with her and I have to remind her that the sun is not my friend! lol

I have a story along a similar line, but it was me who had the "moment of understanding".

My partner developed chronic renal pain after a bout with kidney stones about 3 years ago. Though sympathetic in the beginning, I became frustrated with him always feeling ill and not participating in anything with me. Sadly, I lost my compassion and was insensitive.

I was the one who was obnoxiously healthy. A year ago I was running half marathons and I NEVER got sick. Then I met LUPUS. Crap, now having a shower is about as much exercise as I can handle. I only wish is was just "a moment" of understanding that I now have.

I'm TRULY sorry to my partner and to everyone who suffers from chronic illness. My partner has been excellent with me.

What a great thread.
I have always told everybody here, how great my husband is and he really is. But I always had the feeling he doesn't really understand ( nobody can, unless you go through it yourself), even though he is understanding, helpful, loving, more than anybody can imagine.
He too had the flu and at the same time hurt his back at work, so he had the flu feeling we all know so well and he had excruciating pain at the same time, needless to say, he was miserable. The other day he said," now I can sympathize with what you go through almost daily, but i don't know how you do it, without complaining all day long, like i have".
I had to laugh, because he did kind of whine all day long.
Now I know, that he really understands, when I tell him that I feel awful and that I am in pain.
I guess, it means that he kind of walked in my shoes for a tenth of a mile.

Debbie

I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

A year ago I was running half marathons and I NEVER got sick. Then I met LUPUS. Crap, now having a shower is about as much exercise as I can handle.

I used to be in shape. One year I climbed five of the highest peaks in Colorado. In the Army I hiked 26 kilometers in one day with full rucksack and weapon, then got up and did a 10k run the next day-I even maxed out on every Physical Training Test-no problem. I even hiked the Grand Canyon rim to rim twice in one summer. Now walking the hundred yards to my mailbox and back leaves me feeling physically beat.